My husband was first diagnosed with Stage 4 DLBCL/ Lymphomatiod Granulomatosis Grade 3A in 2016 and went to remission in towards Q4' 2018. During this period, he was independent and can walk on his own. However, he started experiencing severe pain on all his joints towards end of 2018 to the point that he has been bedridden since. He has to be assisted in all daily activities including feeding himself. Both his shoulders are stiff and he cant lift his arms and limited mobility in his fingers as well. We suspect his UCTD could be due to side effect of the harsh chemo treatment he underwent resulting his immune system to be over-reactive & out of control. He has tried Acterma Tocilizumab, Secukinumab (Consentyx) & Golimumab (Simponi), but none of them help to reduce his pain. Golimumab (Simponi) does help to reduce his pain, but the effect plateaued after 6months. Due to long term consumption of Prednisolone, it has weakened his bones and he went through hip replacement, knee replacement and C5 & C6 spine surgery. In fact, his existing condition is worse than having cancer. Right now, he is on Prednisolone (7mg), SulfaSalazine (500mg) 2 tabs twice a day, Leflunomide (20mg) and Acroxia (120mg) to manage his pain and survive through. In fact, he has Methotrexate for over 2yrs. Initially he can still tolerate it but he started to have no appetite and feeling fatigue since 3mths ago. His doctor replaced with Leflunomide. So far, not much improvement, he is still in pain everyday and immobile. As such, he is very depressed and constantly thinking to end his life as nothing really works for him despite seeing several Rheumatologists. Does anyone have similar condition and can share your experience?
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Cancer Council NSW would like to acknowledge the traditional custodians of the land on which we live and work.We would also like to pay respect to elders past and present and extend that respect to all other Aboriginal people.